Why 1 in 88?

Since I began advocating for military kids with autism, the question I am asked most frequently is: Why are the rates of autism higher for military kids?

Is it chemical exposure? Vaccines? WTF?

The rates are not necessarily higher, my friends. It’s complicated.

But I will start with the statistic itself and how it came to be.

In 2007, a Marine spouse and mother of a child with autism filed a request under the Freedom of Information Act (FOIA) for data on the number of military dependent children with Autism Spectrum Disorder.

From the period of June 2006 through June 2008, there were a total of 13,243 active duty dependents with autism. If you take the total number of active duty military dependents and divide by the number of those with an ASD diagnosis you get a simple equation:

The catch here is that TRICARE required a minimum of three claims for service using an ASD diagnostic code within a 24-month period to be included in the data. A trip to the ER for a broken leg wouldn’t count even if the injury was incurred because your kid with autism thought he could fly. In layman’s terms, unless the child with autism was actually receiving appropriate autism treatment being administered via TRICARE, the child was not counted. I can tell you my own daughter is just one example of those not included in the 1 in 88 because she receives all of her autism therapies at an outplacement school. (Remember, we are an Active Guard Reserve family and do not live near a military base.) Can you imagine how many kids are missing in this TRICARE-driven data?

Out of the 13,243 active duty kids with autism only 1,374 were enrolled in the Extended Care Health Option (ECHO). ECHO is the separate arm of TRICARE that theoretically provides autism services and classifies them as special education rather than medically necessary. I could go on for days how ECHO is messed up, but the short version is that enrollment requires prior admission into a discriminatory program called Exceptional Family Member Program (EFMP) that identifies your special needs child and is supposed to make sure that the family is only placed at duty stations that have appropriate services and facilities available to the child. The dirty little secret is that soldiers are reluctant to apply because it has the potential to really screw your military career opportunities.

Now let’s talk dependents of retirees.

The same report listed 8,784 retiree dependents with autism for that time period. Imagine how many there really are today. The math starts to get really nutty, but if you attempt to calculate how the retiree dependents contribute to the overall statistic using DoD numbers of retirees, you get an even higher rate of 1 in 67.

Let’s say you serve in the military for twenty years and you are eligible to retire. You and your eligible dependents will still receive TRICARE standard medical benefits, but your parting gift is the end of ECHO autism services. That’s right. Gone. It doesn’t matter if your child with autism is five or fifteen. You get nothing.

Did you know that there are now countless ‘retirees’ that didn’t quite make it to twenty years of service and are left without special needs benefits for their dependents? Why, you ask? Because there is such a thing as a ‘medical retiree’ – a soldier who is forced to retire due to injury or disease. They also lose ECHO. Yes, that means a Wounded Warrior who retires from service with a special needs child loses all special needs services for that child.

So you still want to know the answer to why the rates of autism appear higher than the civilian population? I don’t have the exact answer. No one does. And frankly, I don’t really care right now because right now we have treatments that work – yet our military kids are being denied access to them.

So for the 1 in 88, can we please just throw these kids a bone? Isn’t autism hard enough? Aren’t deployments and Mom or Dad being gone for a year while getting shot at kinda sucky? Why on earth would we provide medical care for our wounded warriors but not our warrior kids?

The Caring for Military Kids with Autism Act (CMKAA) H.R. 2288 makes autism therapies, including Applied Behavior Analysis (ABA), a part of TRICARE standard medical benefits. It removes the dollar cap and allows for a child to receive the recommended 30-40 hours per week of services. Most importantly, removing the autism therapies from ECHO means that the services are still available to retiree dependents.

You will be taken directly to an easy-peasy form field that takes less than two minutes to complete. I have written a sample letter you can cut & paste and your support will go directly to your Representative in Congress.

It’s time, people.

Let’s get it done. Hooah!

[Ed note: current FOIA requests for TRICARE data is being witheld, but estimated number of both active duty & retiree dependents with autism is now approximately 23,000.]

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About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome.
View all posts by Rachel Kenyon

10 responses to “Why 1 in 88?”

“Did you know that there are now countless ‘retirees’ that didn’t quite make it to twenty years of service and are left without special needs benefits for their dependents? Why you ask? Because there is such a thing as a ‘medical retiree’ – a soldier who is forced to retire due to injury or disease. They also lose ECHO. Yes, that means a Wounded Warrior who retires from service with a special needs child loses all special needs services for that child.” — Thank you, Rachel – for including my family’s situation. I had no idea that there were so many loopholes that TRICARE used to get the 1 in 88 figure… I’m sure it is much, much higher. Will write another letter to my elected officials again tonight, and a thank you note to Congressman Rooney in Florida for signing on as a cosponsor. I got a personal letter from his Legislative Correspondent because I sent a hand-written letter and a photo of my son begging for him to cosponsor H.R. 2288 – that same day I got a response was the same day he signed on as a consponsor!

Here is some food for thought…perhaps the 1:110 is conservative figure and the real prevalence rate we see in our communities across the nation is closer to the 1:88 figure. When you look at the military family, we are a microcosm of society as a whole. We are ethnically diverse, geographically diverse, economically diverse….the list goes on. The CDC rate of 1:110 is actually an average of several states across the country (i.e. New Jersey, Louisiana, etc). Now comparing the prevalence rate of Louisiana to New Jersey and you get an average closer to the CDC’s rate of 1:110. Is there anything protecting the borders of Louisiana from autism? No. Comparing Louisiana to New Jersey, what is the real difference? The answer….access to specialty care and service providers that can diagnosis autism. And what’s the one thing that is consistent among our military families? We all have access to the same health care benefits. So perhaps the military prevalence rate is a better reflection of what we see in the schools and our communities today. Just my personal opinion…..

What I wish for is treatment for our kids. What I wish for is that every time a Congressperson is told of a child with autism not getting the care they deserve, that the numbers melt away, and the child receives the attention he or she is due.

1 in 88 could be 1 in a million. Our precious kids are not numbers. Our military heroes are not only the soldiers who fight, but the children who kiss those soldiers goodnight – whether in person or from a world away. They deserve nothing less than the very best of care.

Until people stop looking at numbers and start seeing our children’s faces, we have to keep sharing our stories.